August 28, 2006 at 4:20 pm #14510mels803Participant
Hi Lynne and Peter –
My brother is on that clinical trial that you’re speaking of at Dana Farber. (For what it’s worth, it’s also at MGH if you know someone there). Chris has been seeing Dr. Jeff Meyerhardt in the GI oncology group at DF, who has been very compassionate through the entire process. He also apparently is doing something right as Chris just had a 23.8% (but who’s counting?!) reduction in his tumors. Unfortunately, because Chris is so young (25), no one is really that up front about where his tumors are, how large they are, and how much they need to shrink before he will become a surgical candidate. I suspect that Dr. Meyerhardt will be much more up front with you if you want him to be (it just seems that no one in my family really wants to hear the whole story and I am not in a position to pry). Anyway, feel free to contact me at firstname.lastname@example.org if you’d like more information on Dr. Meyerhardt, Dana Farber or the trial. I will help out to the best of my ability.
– MelissaAugust 28, 2006 at 12:08 pm #14509peterMember
Who is your Boston oncologist?
I live in VT but will be seeing Dr. Keith Stuart in Boston next week as he has experience working with BDC patients. He’s currently at BI but moving to the Lahey clinic soon. I’m interested in the trial you mention.
PeterAugust 28, 2006 at 3:26 am #14508lynneParticipant
Just a note about Avastin. I’m seeing an oncologist in Boston, and I haven’t yet begun treatment for gallbladder cancer, but he has proposed a clinical trial out of Dana Farber in Boston involving Avastin, oxaliplatin and gemcitibine. I would think that Dana Farber Cancer Center would have more information; I think the trial is just in NE for bile duct and gallbladder cancer patients.August 25, 2006 at 12:33 pm #14507peterMember
Darthmouth Hitchcock, our local cancer center, is participating in the Phase III trial that Woody mentions and is one I am considering. I have not heard that all participants will be opened for XL119 but, if true, that’s great news.
Currently eligibility requirements include specific ratios on liver enzymes. AlkPhos is 2.5 times the norm and I’m just out of range.August 25, 2006 at 6:16 am #14506
I am heart-broken to hear about Sam. His service sounds wonderful. Please let us know if there is anything we can do. Our thoughts are with you.
Some news on AZD2171, the new Avastin. It is offered through AstraZeneca. I have a cousin in Florida who is a sales rep for AstraZeneca and I just e-mailed her to see if she could get us more info on it. Looks like the trial in England is the only one open to CC patients unless the liver trial will take a cc patient. My oncologist is interested in getting me on the trial before I start Avastin. I don’t mind travelling to England to get enrolled. I wonder if they would let me do follow ups in America or if they would accept Americans. Sure would love to see Londaon, Liverpool (I’m a huge Beatles fan), and the James Herriot country, Scotland, the Cliffs of Dover. Actually, I’ve wanted to go to England for some time , more than anywhere else. This may be my chance. Will let you know what I find out.August 25, 2006 at 4:58 am #14505woodybcox-netParticipant
For the phase 3 XL119 study, you had to be treatment free for 6 months, plus additional criteria. The study is detailed at
If they are opening the XL119 to all participants (as I was told), they may also change the eligibiity requirements.
I will post any information I learn.
I am trying to develop a comprehensive data base of treatments and individual responses. If you are willing to share your experiences, please email me at
woodyb @ cox.net
and I will forward the suvey form and send you periodic updates of everything I learn.
Woody BeckmanAugust 24, 2006 at 4:40 pm #14504rickKeymaster
Betty, I had a little trouble this morning myself posting on our cholangio blog. The link is now up and working.August 24, 2006 at 2:37 pm #14503betty-johnsonParticipant
Hello Caroline – For some reason I cannot post to our blog. As you probably do not know, Sam lost his battle on August 10th at 6:05 p.m. I wanted to put the picture of the sunset that occurred when Sam died but just cannot get anything to work. I am absolutely lost without him and just sort of walk around in a daze; there is just no way to describe how much I miss him.
Sam’s service was very touching. Two of his best friends gave the euolgy – one spoke about his integrity and how many lives he touched; the other talked about how competitive he was. The First United Methodist Church of Demopolis is a very large church; it was packed with people standing in the back and around the sides. He would have been very touched. I am going to try and post to a new blog and hopefully Rick will be able to add it after I post. It will be the Sam Johnson Family.
My prayers are still with all of you.
BettyAugust 24, 2006 at 5:10 am #14502
If you read the Johnson Family blog, you’ll find that he did XL119 in 2005. Go to the January 2006 archive on their blog and they have a summary of his treatments. I think he was on it last summer.
The Johnsons haven’t posted for a while. Does anyone know how Sam and his wife are doing?
-CarolineAugust 23, 2006 at 8:59 am #14501ukmemberMember
The details for the XL119 trial in the UK can be found on this discussion boards in is in Clinical Trials, XL119 with names and contact details.
PatriciaAugust 22, 2006 at 6:24 pm #14500alisonParticipant
My husband is on the ABCo2 trial at the moment and drew just the gemcitabine the last scan showed stable disease ,but no shrinkage . He has 2more treatments in thsi trial .we are now thinking ahead .and I was wondering where the XL119 study is taking place and if it is open to people who have had chemo already ? as we understand some trials are not . he also will havea 2nd surgical opinion with Proff Lodge after the Gemcitabine has finished
AlisonAugust 20, 2006 at 11:42 pm #14499stacieMember
That is great news. Please let us know how things go on the trial.
StacieAugust 20, 2006 at 6:32 am #14498woodybcox-netParticipant
I was in the XL119 phase 3 clinical study and dropped out because I was assigned to the control group rather than the XL119.
However, I just learned that the study is being changed to open status, and that all participants will get XL119.
This sounds like very good news.
WoodyAugust 11, 2006 at 4:22 pm #14497geoffMember
Excellent news re your stable tumors. Good to hear that the Gemzar + Xeloda combo seems to be working. I think I mentioned before that here in the UK this combo is referred to as GemCap and a recent trial for patients with advanced pancreatic cancer showed the combo to be more effective than Gemzar alone.
GeoffAugust 11, 2006 at 7:37 am #14496
Good news on Wednesday. My blood work continues to look good and while my scan results were mixed, most of my tumors are stable. The ones that have grown haven’t grown that much, so we are very encouraged. The oncologist feels it’s the Xeloda that’s really making the difference. Additionally, I am no longer anemic. I’ve added red meat back to my diet and I had a big steak dinner on Tuesday night, so I don’t know if that helped or not.
I did also have my Gemzar infusion on Wednesday as well. We have decided to have a port installed next week which will access a vein near the collarbone for blood draws and chemo. We won’t start the Avastin until the port has been in a week or two and the risk of infection for the port insertion is over. The chemo drugs slow the healing process, and the Avastin would further complicate this, so Dr. Bergen doesn’t want to add Avastin right away.
My hand-foot syndrome has really flared up today. My feet are red, sore, hot, and peeling. So I’m going to suspend the Xeloda for two or three days.
All for now. It’s late and I must get to bed.
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